Omg if I don’t get this off my chest I’m going to throat punch someone.
I just got back from my follow-up appointment with (a new doctor) at Duke Pain Clinic. It took me like, 3 months to FINALLY get in to see someone. Here’s what happened.
First, I get there and they’re telling me I need to reschedule because I was late [1:30 appt and 1:00 arrival]. It’s not my damn fault that I had to drive through TWO parking garages to find a spot IN THE SUN. That took almost fifteen freaking minutes, and we factor in two elevator rides, yeah, I got there a little late. I was not about to make another appointment, so I asked them what they could do and because there were only two providers, there was no time and I could wait until 3:00 if I wanted to be seen. I sat the fuck down and waited. Thankfully, the person who would had the appointment after mine didn’t show up, so I got in quickly.
Second, the nurse I had was a crotchety old wench who didn’t listen when we were going over my medications and medical history. The updates were on the paper, in her hand, that she was looking at while typing. HOW she missed that I have zero fucking idea. She leaves after what felt like hours.
Then, in comes the doctor. I like him, he’s easy to talk to and very smart; unlike some of my doctors. Right off the bat, I said that I was tired of the back and forth with the insurance companies and I want a diagnosis and a treatment plan, so I can put this all behind me. I gave him the whole schpeel; testing, treatments I’ve tried, information about the appointments with my Orthopedic Surgeon, medication, so on and so forth. I mentioned to him that the previous doctor [at Duke] didn’t agree with my Ortho’s diagnosis of Complex Regional Pain Syndrome because I didn’t have all the diagnostic criteria. Fair enough. He did a quick exam of my shoulder/forearm and noticed the weakness, [lack of] range of motion, and swelling. He agreed that I don’t have ALL the symptoms that are “normally” present with this disorder. I looked at him and said “I’m a zebra. Always have been. Always will be. There’s nothing normal or typical about me.” He got a good laugh out of it. After we discussed everything, he stated that he does in fact think that I have Complex Regional Pain Syndrome. SUPER.
My treatment options are sad.; they’re just…sad. One treatment involves injecting a steroid and nerve block IN MY NECK. Nope. He said that usually works on patients who have swelling and redness across the whole shoulder/arm, since I don’t have that and given my history, he doesn’t recommend it. Awesome, because there is noooo fucking way someone is sticking a big ass needle in my neck unless I’m unconscious and even then, someone might get throat punched. Option two, increase my Lyrica dosage. I’m on the lowest dosage (100mg a day) so he wants me to titrate up for a few weeks to see what dosage works best. Good plan, I gave it two thumbs up. Then of course the old crotchety nurse says (from behind the curtain, in the next room), “don’t forget about the implant.” I thought she was referring to my SCS but nope. If this progresses and causes more nerve damage, there’s an option to place a cervical implant that works the same as the one I have. I must have given him the “Wtf, you can’t be serious” look, because he immediately hopped up and said that it’s an option but not one we need to discuss for [hopefully] a very long time, if ever. I have a follow up appointment to discuss how the Lyrica dosages are working but, since my PCP has been prescribing it, I may just have her continue to monitor it. I have an appointment with her tomorrow, so we’ll discuss that fun stuff.
Here’s why I’m in hyper bitch mode. While I’m happy that there’s a name for the suckage that I’ve had to deal with, I’m not happy with the results. When I was dealing with the aftermath of my drunk driving accident (I was the victim), it was hell. I was in constant pain and spent a lot of time doing physical therapy [both before and after surgery], and the surgery was extremely painful. Aside from all that, the worst pain, was knowing that someone just took a part of me away without my consent. Someone else’s stupid decision changed my life forever. I fought like hell to make sure that the man who hit me got the maximum punishment he could. I went to his court dates and testified to the judge asking him not to allow this to be erased from this driving history. I wanted that man to be stuck with this for life, the same way I was stuck with my injury.
That is exactly how I feel all over again. The accident wasn’t nearly as bad as it could have been, and yet, I walked away with injuries while the other driver (and occupants) did not. Not only were they reckless and not paying attention, but they put their child and my child’s life at risk. I’m thankful every day that Ava walked away from that physically unharmed, but I’m also angry that she asks me about the accident every time we drive to preschool. She asks me why the people didn’t pay attention. She asks me if my shoulder hurts and when is it going to get fixed. It breaks my heart, every time she asks me a question about it. I’m equipped to handle all the baggage that came with that accident, but she can’t. I do my very best to assure her that I’m ok and the doctors will fix my shoulder and that she doesn’t need to worry about what happened because mommy and daddy took care of it. She still asks, and we still respond the same way.
Not only am I angry that my baby is affected by the accident, but that I am as well. Before the accident I was doing cortisol injections in my shoulder, every six months [for the Calcification Tendinitis] and they were working. I had none of the pain that I have now. I can handle pain. I can handle a chronic disorder. I can’t do things the way I used to, with my shoulder being as weak and painful as it is. I can’t play with Ava the way I would like. I can’t romp around with my dogs the way I would like. I can’t even do household chores without being in pain. The damage that someone else caused, affects me every day. The “at fault” driver and occupants; unscathed. They declined to go to the hospital and from the documents I’ve read, no one has an injury claim on their end. So, yet again, I end up with another disorder that I didn’t want or deserve. Knowing that my injury is what it is, sucks. There’s no fix. There’s nothing that can be done surgically, I can’t even do physical therapy at this point, injections don’t work…there’s nothing. An increase in one medication out of the ungodly amount I have now isn’t going to make it better. Nothing can make it better. The best I can hope for, is the ability to manage the pain conservatively. I don’t know what else there is to say. I can’t convey the depth of my anger and sadness. I just hope that no one goes through the experiences I’ve had to.
One spoon at a time. And always, Keep Calm and Autoimmune On.